I first discovered Caring Matters Now back in 2020. I will never forget that day. It was mid covid lockdown and I was getting breakfast ready for my son, who was 2 at the time. We had the radio on in the kitchen and they started talking about this charity called Caring Matters Now, I was only half listening and then suddenly the more they started to describe the work of the charity the more engaged I became. As they described the condition of people that the charity supports, I suddenly realised they were describing people just like me! I immediately looked up the Caring Matters Now website and burst into tears. Finally, at the age of 32, I had found out that there were other people with my condition, and I was no longer the only one.
It sounds dramatic, but I had felt alone for so many years, always wondering why I had these strange birthmarks and nobody else did. My CMN covers my entire back and I also have hundreds of satellites across my arms, legs, and face.
At just a few days old I was lucky enough to be introduced to an incredible Consultant Plastic Surgeon in Alder Hey Children’s Hospital in Liverpool, he supported me with my condition until I was in my twenties (until he retired) and often told me at our annual check-up appointments that he had included my photos in another presentation that he had delivered. Mr Green was willing to do something that other doctors at the time did not want to try, he performed dermabrasion on my back across multiple operations while I was just a couple of weeks old. I can’t remember this of course, but my parents have talked to me about it a lot and have shown me photos of the before and after. Unfortunately, he was unable to remove the mark on my back completely, as it was too large an area, however he did succeed in making it significantly lighter.
As a toddler I continued to visit Alder Hey, where Mr Green performed multiple operations to remove some of the larger satellites on my arms and legs that he was concerned about. He also removed a large amount of excess tissue that I had in my right leg, which turns out to have been linked to my CMN. I ended up with a scar that goes diagonally across the front of my right calf, but at least I could finally fit my wellies on! Being in Alder Hey hospital for these operations is probably one of my earliest childhood memories. The staff were so kind to me on the ward, letting me play with the different toys and due to my young age, they let my mum stay with me overnight on a camp bed. I don’t ever remember feeling scared before having the general anaesthetic, the staff always put me at ease, although I am sure it was scary for my mum and dad.
As a young adult, I was fortunate to meet another incredible Consultant and had many sessions of laser treatment to reduce the pigmentation of the satellites on my legs and back. While this did initially have an impressive impact, over the years the satellites and my back have slowly become darker again.
I really wish that Caring Matters Now had existed when I was a child, it would have been so helpful for my parents to have had more information and support and the chance to meet other families who were on a similar journey. I am also very pleased to see that the charity supports siblings of children with CMN. For my sister, at the age of three, she had to quickly adapt not only to the shock of having a younger sibling, but a sibling with a condition that nobody at the time really understood. She never complained when my CMN meant that mum had to be at hospital with me instead of spending time with her, nor did she ever hesitate to support me if people made comments about my skin when I was growing up.
Like many others who have shared their CMN story, I was very self-conscious as a child and teenager. I found it particularly hard during the summer and didn’t enjoy the comments and staring when I went swimming on holiday. It was hard to cover up then as people back in the early 90s were not as conscious about protecting their skin from sun damage as we are today! Swimwear that covered your back simply did not exist. When my great aunt, who lived in Australia, sent over two swimsuits for me that had a high back it helped me to have more confidence to go in the water.
Growing up I struggled when people said mean things about my birthmarks, it made a huge dent in my confidence, and I didn’t always tell my parents as I didn’t want to upset them. I learnt to wear clothes that would cover up my back and legs as much as possible. I had a good group of close school friends and even though they didn’t understand my condition either, they just accepted me for me.
When I started university, I was excited for a new adventure, but was also concerned about people judging me for my appearance again. I didn’t expect it, but it was here that I met my soulmate, Johnny. He never once questioned my condition and now years later we are married with two beautiful children.
Becoming a mum, myself, has really helped me to be more accepting of my skin and I want my boys to grow up understanding about visible difference and that it is a positive that we are not all the same. I would love to be able to tell my younger self to be more confident and love the skin you’re in!
I am so pleased that I have recently discovered Caring Matters Now, I am happy to support others with CMN and hope that I can help to raise awareness of both the charity and the condition.
